My life on a plate! A place where I get to waffle on about anything and everything, and hopefully raise some awareness about Cystic Fibrosis and organ donation on the way.

Sunday, December 31, 2006

It’s the last day of the year. I always get a bit contemplative around New Year – I am fairly sure everyone does – and the last couple of years I have been a tad teary at the stroke of midnight. This isn’t because I get terribly sad, more due to the huge flood of emotions which seem to envelope me as a year’s worth of experiences, memories and feelings sweep by in seconds, accompanied by a mixture of excitement, trepidation and fear at what lies ahead.

This time last year I was getting very nervous indeed. I had lots to celebrate and look back on happily but was glad to be leaving behind the terribly difficult few months in hospital in the summer which had frightened me more than anything ever before. I was looking forward to a new year, but was saddened by the thought that it could well be my last. This year of course is practically identical, with perhaps each emotion slightly heightened. After all if I were to concentrate on statistics and predictions, I officially run out of time in February. However if the last two years have taught me anything it is that a)whilst there is uncertainty there is hope and b)if I can possibly do what I am not medically supposed to, be it good or bad, you can be damn sure I will try and be that anomaly.

I think I have a better focus this year, as last year I was fairly convinced that I would either have received my transplant by Christmas 2006 or would not be here at all, which thankfully has turned out to be untrue. This year I am trying to go into it with much less contemplation about what the year holds, as I know from 2006 that both the highs and the lows can go to new levels you never imagined possible. I have had innumerable experiences this year which I would never have imagined possible at this stage of my health, from launching the Live Life Then Give Life campaign, to going clubbing with my oxygen on, from giving a speech at the House of Lords, to 2 weeks later being told I was dying and nothing more could be done, then walking 500metres and across that finish line (dressed in more pink than you could possibly visualize) 6 weeks after that.

Who knows what the New Year will bring, and not just in the way of health. But I think you can be fairly certain there will be highs and lows, and so the best thing to do is to look forward to all the new opportunities and exciting possibilities which are about to open up, and when the more testing moments come, charge at them whooping loudly in an act of intimidation and tackle them head on. What I do know is that I have had an amazing Christmas and am going to go forward and live and love 2007 to the best of my ability.

Wishing you all a very happy and healthy New Year.This is my life and I choose to love it.

Wednesday, December 27, 2006

I hope everyone had a fantastic Christmas and managed to eat lots, drink lots and laugh lots as well as get a wide variety of sparkly new presents!

In order to keep it a truly traditional holiday season, I started the whole thing with a festive row with my mum. This is really nothing unusual, we are uncannily like each other therefore consequently when we get along no one in the world could separate us, but when we row, anyone in a 10 mile radius should employ the duck and cover method widely advertised in the 1950s as protection from a Nuclear fallout. Managing to get myself in a complete state I ended the first half of the whole debacle slamming down the phone and incensed at everyone’s audacity to not quite appreciate enough how hard this all is for me (please don’t ask what I was expecting the world to do; elongate Christmas day to accommodate my naps or something I suspect) and deciding that I would not be participating in any of today’s activities. Luckily two things then happened; firstly I read this which sort of put everything into perspective. Secondly I spoke to a friend who knows me better than that and who swiftly informed me she would be round in an hour to help me get ready and then drop me round at my parents, where – I was reliably informed by my sister – my mother was speed-making mince pies in a rage fueled frenzy.

Having got any feelings of stress and vexation out the way in one fell swoop the rest of the festivities were great. Christmas eve is very traditional for my family, by which I mean we have our own very set traditions which may appear somewhat strange to others. For lunch my mum makes two homemade soups, carrot soup and chestnut soup, the choice of which is served with crusty bread and butter. The pretence of these two being offered as a choice has long been abandoned and we are now asked which soup we would like to start with. After lunch, we all snuggle up in the lounge and watch It’s A Wonderful Life. Every year it’s the same film, (its only outing from the video cupboard) and every year the tears flow with monotonous regularity, led by my mother who starts weeping approximately 10 minutes before everyone else. Now the tradition of soups for lunch was started I believe to make everyone feel better consuming copious amounts of food on Christmas day but is sadly duped by our traditional Christmas eve meal, where we head to our favourite Indian restaurant for a calorie-laden treat. This year my lungs were just not having any of it, and I was a tad sad at the prospect of missing it, but we decided to get a take-away instead which meant full participation (yay) but also the new addition of carols round the piano (yes we are in fact the cornflake family).

My granddad is down with us for the whole of Christmas and on Christmas day my other grandparents joined us too, for a feast and a half (my eyes are always bigger than my stomach and I usually end up having to eat my plateful in two sittings.) Boxing day is the other big tradition, where 14 of us all pile over to my grandparents for a huge boxing day lunch featuring the special only-made-by-grandma mushroom rolls, which trust me are far more delicate and scrummy than that simple name makes them sound! The great thing about traditions like our boxing day is it then acts as a kind of benchmark for change; it’s strange watching everyone grow up and each year is just slightly different but with certain key elements (such as "who will sing the line 5 gold rings?" - dad, and "who will give up on the quiz first?" - mum) remaining the same no matter how much time passes. As always I did extremely well present wise and was thoroughly spoilt. I am getting a bit technical this year (no sniggering in the back row please) and my two main presents were a new digital camera (our old one decided to commit suicide) and a camcorder, which means I will never ever do anything constructive ever again as all my time will now be spent making mini-films for no reason. The camcorder is really rather swish and terribly dinky, a small neat compact little thing which reminds me in both size and weight of my old guineapig (I have learned not to question the workings of my brain merely accept the results, life is easier that way) and I have fallen in love with it straight away. A fabulous Christmas all round, I am a very lucky girly.

Incidentally, I was asked the other day by an American reader of my blog what a poppet is. Hard to describe so I did what all good students do and faithfully copied out the dictionary definition:

Tinypoppet is actually my mum’s nickname for me, although my Aunt who lives in Switzerland calls my sister “petite poupée” which means little dolly, (I am “petite princesse” – little princess - and my other sister is “petite fée” – little fairy) but I had never linked the two until I looked that up!

Thursday, December 21, 2006

One of the reasons I think a lot of people like myself struggle with knowing when to stop and rest is that it isn’t really all that clear cut. Say for example I was making the decision whether to go to the shops for 2 hours or not. It isn’t that I can’t do it, more what will the repercussions on my body be and are they worth it. It is possible to do things which use more activity or energy but it does create what the hospital term “payback” (am vaguely confident it’s a medical term not just one I have made up and allocated to a certain feeling) which is also known amongst some of us as a “CF hangover”, so the equivalent of a rather heavy night out and the horrid consequences the next day, but just in lung terms. The more strain put on my lungs, the bigger the payback and the longer it lasts. Now this was fine, I have never minded because I know that if something is really worth it (and there are many things that are) I won’t mind having to spend the next few days in bed wheezing. But of course the lower your base level gets, the less room you have so now small amounts of payback floor me completely so I have to be a bit more pre-emptive, not something I am good at. At present my lungs are furious with me (I haven’t quite worked out why yet, think it may have something to do with leaving the hospital where apparently they were quite happy) so I am having to stay home and behave (or try to) and wear my higher flow O2 mask pretty much all the time.

The last few days have involved lots of friend related stuff which is one of my favourite energy expenditures of all time. One of the most important elements in my life is my friendship network, as without these rather lovely people…well life wouldn’t look half so pink put it that way. My stroppy and controlling lungs have forced me to adapt over the years, and I have no choice but to do as they tell me, however somewhat bewilderingly my ever faithful clan of friends seem to bow down to their every demand as well, making increasingly large efforts to maintain social contact as gradually traveling, then bars, pubs, even restaurants are taken out of the equation by ever increasingly demanding breathers.

Yesterday I had a long overdue gossip with a friend (she did most of the talking in an attempt to stop me from doing so) and then last night a friend of A’s came round for dinner and a pre-Christmas catch-up. At first my lungs were incensed at the idea of having to do any more socializing so I was forced to lie on the sofa festooned in a pink blanket and looking every inch a pampered princess who couldn’t be bothered to sit up and talk nicely. Luckily A’s friend knows otherwise. As the evening went on my lungs decided actually socializing might be quite fun, which was just as well as two more people turned up, one of which I didn’t know and whilst I love meeting new people I am always a bit nervous that I come across as “Emily” rather than “that girl who is ill”. I am convinced that what I look like won’t define me so don’t mind wearing my oxygen, more how I behave is what will create the fixed image in their minds, so I was pleased I was able to chat in a relatively normal fashion. I was even more thrilled when one of them produced a one of those lego construction kits which according to the picture on the box would create a rather complex looking digger and my lungs decided this looked an amusing enough activity to participate in. Watching two guys in their late 20s concentrating hard as they attempt to assemble a kit extracted from a box which is marked clearly “ages 5 and up” was rather amusing. Convinced we could do better, we the girls started to build the second stage of the digger in an attempt to beat and shame them but we were sadly duped by multiple overly similar looking parts resulting in two very gloating men.

Today I was like a rather over-excited child (not too unsual then) as my girlies who I lived with whilst at Uni came down for the day; shockingly this is the first time we have all been together since graduating. Having lived with these girls for three years they are more like sisters than friends really and due to our student roots, lounging around on the sofa jabbering away and not really doing anything constructive comes naturally to the three of us. That is actually a woeful underestimation of our creative skills which were exercised when they produced a box of decorate your own gingerbread men, and the next half hour or so was spent deep in concentration as we created 4 gingerbread replicas of ourselves. I have photographic evidence which I will upload when I find the camera cable (doh). My lungs have done exceptionally well over the last few days and I am really indebted to them, as despite making quite a fuss whilst I am trying to socialize at least they have allowed me to participate (I did fall asleep this afternoon whilst everyone was still here but I still think they did well). I am being really careful and maximizing all medication and oxygen usage so as not to start knocking myself down into a health dip too. I might be housebound at the moment due to inordinately puffy lungs but so far I am having a truly fantastic holiday season and intend to continue doing so. After all it’s not what you can do or where you are, but it’s the people who make it really isn’t it.

Monday, December 18, 2006

One of the people I was referring to who I was on the ward with lost his battle to CF on Saturday night. He was a member of the CF community who use the message boards, and I had been in hospital once or twice with him. Sadly it is the same story; he waited, hoped and fought for a transplant which never came. I spoke to his mum quite a bit on the ward as when I saw her sitting in the corridor, all I could see in my head was my mum having to wait outside the room whilst they worked on me when I was so ill in the summer, so I just sat with her and we talked about anything and everything really. It is always very sad when we hear of a fellow pwcf’s passing, and I think particularly poignant at this time of year. It makes me all the more determined to enjoy and appreciate my Christmas.

What I omitted to mention in yesterday’s blog was the tremendous busyness that has been the last week. Someone (ahem - Emmie) came up with the bright idea of launching a Christmas Live Life Then Give Life campaign – a sort of mini-media hit revolving round the idea that this is the season of giving and goodwill, and linking that in with the gift of life. We are already working on quite a big project (all will be revealed…) but Em’s ideas are usually good ones and we like to keep busy, so true to form we stumbled forward enthusiastically without really stopping to think it all through.

We emailed various people we know who have been touched by transplantation and a whole host of them wrote back saying they would be more than happy to take part. We then came up with the bright idea (the majority of bright ideas associated with me are followed subsequently by the phrase “it seemed a good idea at the time) of learning to write press releases ourselves, as our Media Guru who usually does them for us is juggling about a million and one projects at present. So under her careful guidance, we attempted to sit down and write a press release for each person. Seemingly very simple; in reality, oh so not. Actually I don’t know why I am trying to make it sound as if I didn’t enjoy it because I did, I loved every minute (apart from the late at night minutes where I couldn’t get the wording to sound right and wanted to drown my laptop in the sink). We worked pretty hard on them, as these are not only important to us because of the awareness raising potential, but each individual story is about someone’s life, someone’s struggles and someone’s emotions therefore you have a responsibility to do each one justice. Excitingly every single volunteer had at least one result from their press release, be it a local paper, radio station, or TV. One of them even made the community presswire (a national newsfeed) and can be viewed here. We are overjoyed at this response, and of course very grateful to each and every volunteer, as without a "face" there is no story therefore no awareness (the family featured in the community presswire release won't even benefit directly from this which makes their effort all the more humbling).

I’m so glad I have this to keep myself busy with, as my lungs have been struggling a bit since I got home. I was feeling so much better when I escaped from hospital therefore dived back into life with a great deal of enthusiasm and energy which they were incensed by and are having an almighty strop this afternoon. It’s hard, very very hard, not to get despondent about this; I disappear off into hospital and somehow in a child-like naivety I still expect to come out better. However the team did say to me that this might not be an infection it might simply be my new “level” in which case I need to learn to manage it, rather than focus on improving it, and a hugely simplified way of managing things is doing less. Easier said than done when talking is the ultimate problem…I think I am quite lucky it is talking in a way, it creates a rather odd situation where at one end of the scale ultimately the most frustrating and difficult to comprehend thing to find labouring, but at the other those exact points create an amusement factor based on the irony of the whole situation which I think keeps me sane. Or insane depending on your view point. This is turning into incomprehensible waffle, I think I should stop. Now all I need to do is take that piece of advice and self-discipline and apply it to my every day talking habits…

Saturday, December 16, 2006

Christmas time, a time of celebration, festivity, joy, happiness and most importantly of all sparkle. No sorry, most importantly of all, loving and giving. Thursday saw the Carol service held on the ward. I never knew that they had this (I am fortunate enough that I have never been in so close to Christmas before) but they have a small choir come and sing hymns and someone reads a service whilst various patients congregate in the corridor, creating a human maze and littering the narrow pathway various wheelchairs and oxygen cylinders. Many people with CF are renowned for having a rather bad sense of humour, which is my excuse for finding a gathering of pajama-clad people the majority of which have knackered lungs wheezing their way through carols perversely amusing.

Irony aside, carols always have quite a profound affect on me and looking around it really sunk in how lucky I am - I am going home. Home to spend Christmas with my family and friends, and a lot of the people surrounding me are not. Wednesday night I was lying in bed feeling quite sorry for myself, I couldn’t sleep, I knew Thursday night an event was happening which I wanted to be a part of but wouldn’t be able to manage, and was lying in bed, staring at the ceiling feeling pretty hard done by (cue sound of violins and Greek tragedy theatre-style lighting). However talking to one or two people around me and being exposed to some of the current situations on the ward is a good and timely reminder. It is not wise to sit and contemplate what you can’t do. It wastes energy and time, and more importantly actually anyone in the world could probably list 10 things that they can’t do right now, whatever their current situation. Even when it is hard, it is vital you concentrate on the opportunities that are within your grasp and try and make the most of them. After all you don’t know how long they will present themselves for so it is best to make the most of them whilst you can.

So yes as I was supposed to be saying when I sat down to write this entry, I was discharged Friday and am home, woohoo! Nearly didn’t make it due to both lifts in the hospital deciding to break down simultaneously (my ward is 4 floors up) and at one point knotting bedsheets together and shimmying down the side of the building was looking like an inviting prospect. I had apparently made my mind up that I was going a tad prematurely as the doctors looked somewhat surprised when they entered my room to find packed bags strewn around the room and raised their eyebrows when I confessed I had already taken my longline out, thus not giving them much of a choice but to send me home. Yay for decent internet connection which allows me to post my own blogs, fabulous food and most importantly own bed!

Monday, December 11, 2006

(2nd installment posted by Emmie, I shall have to start paying her.....)

Things are most definitely improving, I’m sure of it now, so time to do a little celebratory dance (mentally though so as to dupe lungs into a false sense of security in the hope of continuing progress). The dizziness and sickness is really a very small price to pay if that is my main concern this admission as opposed to the “lungs could fail at any moment” scenario I was in in the summer, and I am hoping to head home at the end of the week.

My main problem at the moment still appears to be talking. I really can’t take this problem seriously as it just sounds so pathetic and somewhat amusing, but it is actually a bit of a concern as talking is my favourite pastime. In fact it is more than that, as well as being born with CF, I was born with an innate inability to shut up (which as it happens was also inherited). Obviously since being in I have been talking a lot less and consequently have felt a vast improvement, aided by the IVs extra meds and physio. These puffy episodes are so much easier to get on top of in here because when my lungs are telling me to lie perfectly still and hardly breathe I can actually do that, whereas when at home little essential things like getting a glass of water and making lunch become huge marathon efforts if my lungs are in one of their moods. The last few days however I have had a few visitors and been chattering away like an overexcited chipmunk, resulting in two puffy afternoons and I am now back on my higher O2 mask. Sadly after 22 years I still don’t quite seem to have got my head round the concept of “improving” as opposed to “magically cured and reinstated with working lungs” and so the minute I feel a turn around I start jumping around and doing lots and then am surprised when said behaviour doesn’t go down well with my lungs which were (for want of a better phrase) breathing a sigh of relief that I was finally operating on a level they can maintain. I mentioned to my physio that you’d think I would have learned by now, she neatly sidestepped this remark by laughing politely and neglecting to comment.

It feels strange as the end of the year draws closer, and I tend to do quite a lot of thinking about the events of the last 12 months, as I’m sure most people do. It has been an incredibly diverse year with dizzying highs and earth-shattering lows. But as I am always lucky enough to find with my life, this year has made me even more determined and eager to experience and to cherish the next. When mulling over the years events I figured out that I have spent about five months in hospital in total since January, a new record for me. This, combined with the final point below also lead me to doodle the following list on my napkin (which provided an easy to write on surface confirming my suspicions that they are more suitable for scrawling on than wiping ones hands and face with)

You know you’ve spent too long in hospital this year when:

-You know the lunch menus of by heart, and don’t even need the special diet menu anymore as you know which number box correlates with which choice.

-Nurses ask after each member of your family. By name.

-The radiographers know you and also that you are an anomaly and will therefore require two X-rays (no arguing, yay!)

-Doctors, nurses and physios who aren’t actually treating you pop in to say hi and see how you are doing

-You can tell the trainee nurses which cupboard and on what shelf the 35% mask is on.

-The tea lady knows how you take your tea.

-You own more sets of Pajamas than any other type of clothing.

-You’re excited because you got a portion of Cheshire cheese with your crackers instead of the usual cheddar

-You find yourself crying at Herbie the movie – a clear sign you are losing your grip on reality

I am feeling very upbeat as there is just so much to be happy about and look forward to! The apparent improvement in lung behaviour is boosting my confidence, so I will continue to work hard on meds, physio and rest ready for the spangliest Christmas in the world ever. I think the main reason I love Christmas so, is that it’s the only season I can openly flout glitter and sparkle everywhere without having to explain myself as the rest of the world seems to be participating. Consistent to all areas of my life and personality I am being totally unorganized and have as yet done very little Christmas shopping (being in hospital isn’t really a legitimate excuse as I am fairly certain I would be in the same state of unprepared-ness if I was at home). This evening I shall be mostly writing press releases (in the vague pretence that I am able to do so) sitting wiggling and singing (mentally) along to various upbeat songs whilst steadfastly ignoring the pile of Christmas cards sitting at the end of my bed waiting to be written.

Friday, December 08, 2006

Just a small update to reassure everyone that I am fine – this is being posted by Emmie due to the hospital network being extremely mean and barring me from pretty much everything including my own blog. I am not impressed. I can sporadically access my email (most frequently working one is webmaster (at) pwcf.net one) however and also this link http://calm.adventcalendar2006.co.uk/home.php which a friend sent me and is keeping me sane (in particular hurtling Santa across an icy abyss is most therapeutic). It is strangely nice to see everyone again - all the staff who I got to know fairly well over the summer - especially as they all keep commenting on how well I look compared to last time! When I left in October we thought I may only manage a week or two at home, but instead managed to remain an outpatient for 2 months which is rather good going really.

I went on a daytrip over to the other building this morning for an echo of my heart, as they are still trying to work out what is causing the dizziness which makes me feel like a small drunk pink firefly. It was nice to get a breath of fresh air (well as fresh as London air can be) and all went very smoothly. I lay on the bed with the lady rolling what to me looked like a children’s microphone you get on karaoke machines on my chest, (something to do with ultrasound) and attached a little suction cup which apparently amplified my heart sounds, and reminded me of that strange health craze I have read celebrities and people go for. I tried to peer at the screen over my shoulder with a look of intensity and understanding, despite only being able to make out what appeared to be grayish black blobs and movements reminiscent of pond life. There was one angle though which was incredibly clear, I could see my heart valves moving and everything, which I found fascinating and quite hypnotic.

During this little excursion I also got “recognized” – a very rare occurrence but on the times it has happened it is rather fun. The lady asked if I was Emily and then congratulated me on the Hydro active 5k which I took part in back in September. This was I think due to me featuring in this months issue of the staff magazine at the hospital, with a photo of me on the front cover, arms in the air triumphant having crossed the finish line. Amusingly the rather misleading caption underneath infers that I walked the entire distance, rather than just the final 500 metres. Whilst that would have been a feat indeed, I think both me and my team would have asked for a review as to whether a transplant is really all that necessary.

Tuesday, December 05, 2006

My campaign partner in crime Emma and her husband have just returned from the Caribbean, where they have been hiding out for the past month before graciously agreeing to come home. I thought it would be nice to see them for a quiet lunch and “business meeting” (in inverted commas due to the complete falsity of that claim). My lungs however spectacularly disagreed with me that this was exciting enough, so on their arrival decided to start up their attention seeking antics. I carried out all the usual methods of count er-attack; (it is like having a five-year old that exhibits regular tantrums, you learn certain tricks which hopefully trick the little blighter into submission) I nebulised the appropriate medications, put on my high-flow mask, tried extra physio, lay down, even stopped talking, but my lungs were having none of it. The problem is once these puffy episodes take hold they can become a bit of a vicious cycle, with my lungs screaming for a rest, and of course the one thing you can’t do is stop breathing to give them a break, therefore the muscles ache more and more and each breath just becomes increasingly harder work. Usually the high-flow mask does the trick, but this time not even this trump card was having the desired affect. Due to having quite a large amount of chest pain over the last few days - fairly normal for me but nearly all of this has been concentrated on my right side, which was the persistently deflatey lung this summer – I was coerced into being sensible, rang my hospital and as predicted was instructed to head to my local hospital to rule out a pneumothorax.

As I began ordering people around to gather together my stuff, I realized that my funky new liquid O2, as great as it is, only goes up to 6litres. The mask I was currently using runs on a minimum of 8litres, resulting in the horrible recognition that I had no choice but to call an ambulance. After offering various suggestions such as “I could go and lie down again and see if it feels better” which were met with a no nonsense retort of “if you don’t phone them I will” I sulkily picked up the phone and dialed 999, feeling like the biggest fraud in the history of the world. I kept apologizing repeatedly to the poor operator as I know how stretched ambulance resources are, and having needed one in a dire emergency before I hate to take up their time when in fact it isn’t life or death. I know all the spiel off by heart, explained I am end-stage cystic fibrosis, awaiting transplant, recurrent pneumothoraces two of which have tensioned and what my present difficulties were. It doesn’t matter how much you already know the spiel, it doesn’t make it any easier to say. Nor did knowing that this wasn’t a huge dramatic emergency make asking for an ambulance any less frightening.

A first response unit car turned up very quickly to assess the situation, followed minutes later by an ambulance. My house is not very large, and has a rather slim hallway which is not really designed for 5 paramedics to be wedged in, attempting to filter into the lounge. After assessing the situation and taking a few readings everyone was satisfied that I was OK to be moved and set about getting me into the ambulance. I offered to walk which strangely they didn’t think was a great plan, so insisted on wheeling a little stretcher-chair into the house (amusingly having to first stop and move the huge obstruction that is a mountain of my shoes from the hallway into the bedroom) then placing me on my throne with wrapped in a blanket with various wires attached (but sadly no tiara as requested).

I think I am going to have a typed out essay with my life history on it, or learn sign language or something, because the worst bit about a new admission like this is having to give all your details and history when the reason you called them in the first place is because breathing has become a monumental challenge. Emma dutifully tried to answer as many as possible for me, but the list was endless, with some of the good old favourites such as “how long have you had CF” (which make me want to staple things to the person's head) making an appearance. The superlarge quantities of oxygen they were giving me were clearly working, because as the aching and fatigue lessened, my pouty-face and evident annoyance at daft questions escalated, to the extent that I had to avoid eye-contact with Emma and stare very hard out of the window (made somewhat less realistic by the fact the blinds were down) biting my lip to stop from laughing.

My lungs are pretty complex, and CF care is very specialized, so every time I turn up at a general hospital I know it is going to take rather a lot of explaining and scowling to get the correct treatment. I tried explaining that I just need 2 X-rays to rule out any collapse, as I already know my lungs are grumbly which is why I am awaiting a bed at the Brompton, so as long as it is not immediately life-threatening I can go home and wait there. After scaring the radiographers into submission (I still don’t understand how the argument “we don’t do laterals” – a rare sideways X-ray which I need to show up the weird areas of collapse I get – is used so freely as a retort when clearly I wouldn’t be asking for one for fun, unless I had an uncontrollable desire to glow green or something) and subsequent X-rays revealing no new problems, I immediately switched tack to “let me out let me out let me out let me out”. The trouble is my lungs seem to make general docs break out into a sweat and it is hard to explain that actually my level of “normal” greatly differs from the majority of people who arrive in A&E, therefore they needn’t feel bad at letting me go with the problem unsolved because there is no quick fix. Whilst we waited for discharge we killed time by pondering riddles such as “why in a hospital do they not have any portable O2, meaning I have to walk to the bathroom with no oxygen at all?” and other mysteries.

Having talked the doctor (who was actually a very nice guy, very thorough and did listen) into letting me go home, we suddenly realized that having arrived via ambulance I had no portable O2 with me. My lungs were a bit happier having had some mega high O2 support, so I felt I could tolerate nasal specs on the way home, so promptly sent the men home to locate and retrieve appropriate oxygen supplies. Brad returned triumphant with Nellie (liquid O2 cylinder) who true to her name was honking and trumpeting loudly, I suspect she was indignant at being moved about at this time at night. We wheeled me speedily to the car, where their poor well behaved dog was so delighted to see our re-emergence she promptly jumped up on the dashboard setting off the car alarm in her excitement. As Brad grappled desperately for his car keys to silence the screaming car whilst simultaneously trying to stop me wheeling off unaccompanied down the slope, it dawned upon me that instead of sensible shoes, I was sporting large cerise and pink striped bed socks, and whilst they made me smiley due to the bagpuss-esque appearance of my feet, they were possibly not the most practical footwear for wet and rainy weather. We pondered this a while, before Brad came up with the ingenious solution of me standing on his feet and walking to the car in manner of 5 year old child or similar, Nellie honking gleefully in a musical accompaniment as we waddled towards the car. On reflection our departure was not the slick and sophisticated one I envisaged.

Whilst there was joyfully no signs of collapse (yay) lungs are still being incredibly grouchy – I haven’t moved from my bed yet this morning and my muscles are already behaving as if I have been for a brisk 5 mile run before breakfast. Breathing is just so very very tiring. So I am heading into hospital for a spell, feeling very upbeat about it as to be honest when it gets this hard I would much rather be in there resting nicely (or pretending to) plus I am viewing this as a pre-Christmas MOT so nothing to be too concerned about.

Have got a bed (woohoo) so I am just waiting for my lungs to settle a bit and behave enough to make the journey up there. Hoping to find some net connection to preserve sanity but if there is an unexplained absence of postingness that is why!

Friday, December 01, 2006

Wednesday night, I was sitting on the sofa, in my usual pretence of resting whilst actually working on campaign stuff and generally mucking around on the net. Suddenly a message appeared on one of the forums I use saying it had just been announced that Gordon Brown’s son has been diagnosed with CF. Bemused I turned on the TV and watched the news item which was by now on most channels. Then when I saw Nick Robinson’s report which mentioned my speech at Downing Street two years ago I realised things may get a bit busy, which turned out to be a rather accurate prediction.

The phone rang as I was still watching the news that evening and marked the start of what was to be a rather hectic 24 hours. On Thursday the phone first went at 8.30am and then rang pretty much continuously throughout the day. Thank god for A’s mum and my mums friend who both made the mistake of popping round to see me and found themselves fielding phone calls, taking messages, welcoming camera crews, and their most formidible task; forcing me to shut up and lie down for five minutes to rest, as well as eat and drink in between talking.

I am a CF Trust ambassador (along with my partner in crime Oli who was equally rushed off his feet yesterday) so I expected and welcomed the job of explaining CF to various people in the media (plus of course I featured yesterday as “the girl with CF who did that speech”). I spoke to a couple of newspapers (two of the articles viewable here and here), did a radio interview, and quite a few TV interviews, with the last camera crew packing up and leaving around 6pm. Consequently I am being meticulously behaved today (relatively speaking) and am staying in bed with my high-flow mask on, which tiny lungs are very much appreciating.

As you may have gathered from this blog, I enjoy telling people about CF and my life with it; I find it cathartic and that it alleviates some of the feeling of helplessness which accompanies my present situation. Doing ambassadorial work has presented me with opportunities, and more importantly has allowed meet a variety of different people, and continues to facilitate what for me is this vital link to normality – I don’t think people realise just how much social interaction is created on a day to day basis through simple things like at the station, at work, and at the supermarket and other seemingly mundane activities - even now I am quite restricted due to oxygen and general refusal of compliance from my lungs.

As for the overall trigger to this mass media interest in Cystic Fibrosis, my thoughts are well and truly with the Browns, as it would be with any parents learning of a new child's illness. I do not know what it is like to be a parent who is told that their new baby has a life-threatening condition, but I have talked to my parents about their experience and spoken to various families and parents about their experiences. When I was born, my parents had the choice and freedom to tell who they wanted how much they wanted, and to come to terms with CF in their own time. As I understand it a newspaper broke the story on Wednesday night, so consequently this is a freedom they do not have, and regardless of who they are they will like any parents be trying to adapt to life with CF as a family.

Cystic Fibrosis is not a trivial matter, and it can be a terrible illness. There is absolutely no point me saying otherwise as my present circumstances would completely belie any such statement. But what I tried to make clear in any media I appeared in is that Cystic Fibrosis is a part of your life, it does not dictate who you are or the life you lead. As I said in a previous post, when I discussed how we use the label of an illness, the mere diagnosis of having Cystic Fibrosis does not instantaneously qualify for or except you from anything. The fact that you have CF will not change regardless of how you decide to view it and so the statements released on behalf of the Browns which say that they are staying positive and optimistic and focusing on their healthy fit and thriving baby boy reveal a fantastic attitude and one I agree with.

When the CF Trust was formed in 1964, cystic fibrosis was a childhood illness, with an average life expectancy of just 5 years. By the time I was born, this had risen with predictions that I may well reach my 20s, and for children born today with CF, the outlook is even more hopeful again, with a current life expectancy of 31 and rising with funding and research allowing for constant improvements in care. For me CF has wreaked havoc and indeed wrecked my lungs, but not my life. I am determined to try and keep a positive attitude; I don’t see what harm staying optimistic will do and it may even help.

About Me

29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy.
I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.